Musings of an Incorrigible Writer

11/05/2016

Last week, I finally found time to tune into the new ABC comedy Speechless. The show has been positively praised by just about every TV critic as being one of the best, if not the best comedy of the year. If you scan the reviews you’ll find words such as: aspirational, offbeat, genuinely funny, compelling, irreverent, nimble, quirky, and heartfelt. The show is hailed for showing the complexity of living with a disability, while not becoming overly-sentimental or sappy. One reviewer said: “Speechless exemplifies simple human decency without emphasizing it. Its world exists as ours should; unembellished. And in that, its powerful message could become extraordinary.”

07/23/2016

I completed my version of a Triathlon today. I walked 3.8 miles on the Henry Hudson Trail (all flat terrain), then came home and swam my laps (gentle breast stroke) and after dinner took out the bike and made a couple laps around my circular driveway.

Not bad for a Lymie who has been almost completely physically inactive for three years. I truly feel like I've turned a major corner, as I am finally able to partake in physical activity. It's baby steps, I know, but feels so much better than being a lump on the couch. I didn't know how much I missed being active, until it was taken away from me.

Of course, the real test comes tomorrow. Will I have the energy and stamina to stay active? Or will climbing the steps feel like I'm climbing a mountain? Stay-tuned.

07/01/2016

The ignorance around chronic Lyme continues. I'm so tired of articles about the skepticism around Yolanda's lyme diagnosis. Read latest here.

When you have cancer or AIDS, people support you rather than question your health. When Pedro Zamora took part on The Real World, he was trying to raise awareness about HIV and nobody complained that he didn't "look sick" or "act sick." He was a young, vibrant-seeming man giving a human face to an ugly, terrible disease. A disease that took his life way too soon, and that many people ignored until they saw celebrities or reality stars dealing with it.

I have met so many people who have suffered exactly like Yolanda Hadid. Not one of us who has fought this fight has any doubt she is telling the truth about her sickness. WE HAVE FRICKING BEEN THERE!!! And we understand how hard it is to get the medical community and insurance companies to help us when the general population treats us like we have an imaginary illness. If they don't acknowledge it, there's no research. Without research there's no cure for millions of people currently infected and suffering.

06/10/2016

Woke up with a terrible headache today and all over aches and pains. Not sure if I'm herxing, or it's hormonal, or due to weather changes, or something I ate, or maybe I was just due for a bad day. I can't complain, as up until today, I've had TWELVE GOOD DAYS in a row!!!

I'm hoping this is a temporary flare and am focusing on the fact that I have felt almost normal over the past two weeks. Now I know there is light at the end of the tunnel. My body is capable of healing. I'm not always going to feel this way. I'm going to beat Chronic Lyme!

Like Scarlett said, "Tomorrow is another day." Hopefully, it's a good one.

06/06/2016

Last week was a very good week! In fact it was the best week I've had in three long, brutal and agonizing years. I feel like a new person, or rather like my old self.

I'm not saying I'm completely cured. I still am extremely tired, but for the past nine days, I have been almost pain-free. As in, for the first time in 1095 days, I am without pain in some part of my body. I haven't even had a headache.

Now imagine how I must feel. I've been in pain for every second of every minute of every hour of every day for 1095 days! And now, suddenly I am free of pain! It is nothing short of a miracle.

05/24/2016

Yesterday, I had a GOOD DAY. I Went to breakfast with a friend. Came home and made some phone calls instead of collapsing. Used my Nutribullet for the first time for lunch, and made a nutritious and delicious green smoothie. Took a trip to Home Depot for some flowers. Made a healthy dinner. Took a walk.

It was not a typical day for me, which usually entails going to one doctor's appointment and then curling up with Netflix for the rest of the day. Generally, the thought of cutting vegetables or taking a shower or making a phone call is just too overwhelming. So it wasn't just nice to have energy, but to have clarity of thought and a positive outlook as well.

However, as sometimes happens when I have a GOOD DAY, I didn't have a very good night. The aches and pains, especially in my legs, were off the charts. Even though I only went for a simple walk around the neighborhood, I felt as if I had run a marathon. And I guess for a chronically-fatigued Lymie, I sort of did.

So perhaps I did too much yesterday, or pushed my body past its limits. But trust me when I tell you -- one can only rest so much. At this point I'd rather walk/move and risk being in pain, than sit around and do nothing for the rest of my life.

05/18/2016

It's impossible to find a cure without funding. And without awareness (especially media awareness) diseases tend to be ignored and hence, no funding.

So many people are suffering from Lyme but all the media talks about is Zika and Ebola. They like scary, deadly disfiguring diseases because they make for better headlines.

But don't be deceived....you have a much better chance of coming down with Lyme than Zika or Ebola. It's right in your backyard. It's hitching a ride on your dog.

It won't kill you immediately. No, it's a much more insidious disease than that....it steals your life in a heartbeat, and then keeps you alive for years to watch the world go on without you while you sit in bed in agony.

05/13/2016

Right now, my sensory overload is so heightened that I rarely leave the house unless I absolutely need to. Anything having to do with crowds? NO THANK YOU. Driving fills me with dread because the aggressiveness of it here in NJ (I don't even like to be a passenger). Going to a restaurant? Too loud and too many weird smells. Even the movies (once my refuge) fill me with discomfort.

But that doesn't mean that I'm safe from sensory overload even at home. This morning, the lawn guys have been working outside for the past thirty minutes and it fills me with RAGE. Not just because of the sound, but because of the smell of fuel from their blowers/mowers. I can feel the vibrations of their machines vibrating throughout my body. These things are enough to trigger a migraine, and unsettle me for the entire day.

05/11/2016

A new record-- it's been SIX DAYS since I suffered from a migraine or even a regular headache. While other aches and pains are ever present, it is nice not to have constant pressure in my head (or to be constantly reaching for Advil or Imitrex).

I'm especially surprised to be headache-free because I'm usually quite sensitive to rainy weather and generally have lots of sinus pressure and pain during allergy season. I've been trying a lot of new treatments, but am wondering if it's the HYPERBARIC TREATMENT I tried SEVEN DAYS AGO that's had the greatest effect. According to research HBOT is supposed to increase the time between migraines.

Should be interesting to see what happens if I try additional treatments.

05/10/2016

If I had a time machine, I'd go back exactly three years to May 10, 2013. I did not know it at the time, but a harmless walk in the woods would change my life.

I saw the ticks and thought I got them all off of me. I don't remember being bitten, but in May the nymphs are tiny and would be easy to miss.

It was just a tranquil walk in the woods with my sister. And now I wake up every day in pain. A couple weeks after this walk the joint pain and stiffness began. Then the horrendous summer flu from which I never got better. And it's been a long hike through sludge ever since. Be careful out there, folks!